http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10597
Sat, 05 Oct 2013 04:49:26 +0000PunBB 1.4.2http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80780#p80780
Hi Michelle, my husband also belongs to the stubborn club, so I can totally relate. When I think he needs to be seen by a doctor I give him three choices...he or I calls the doctors office for guidance, or we go to emerg, OR I call an ambulance. I promise that I will follow through and so we've never had to call an ambulance. I've been really ill before and tried to deny needing to go to emerg. Luckily no one listened to me and dragged me to the hospital - I ended up having a heart attack (at age 42) in the waiting room! Ever since that happened I've been non negotiable when it comes to making the call about seeing the doctor when I have a gut feeling. You may not feel very strong, but I can tell that you are super strong Michelle. You are handelling so much right now, more than the average mom/wife should ever have to handle. Be kind to yourself and know that there are many people here that believe in your strength. My son always says "We have to use our Super Powers for good!" Sometimes we have to use them to get others the care they need. Hang in there Michelle, one day at a time. As I read in another post...."just keep swimming...."]]>Sat, 05 Oct 2013 04:49:26 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80780#p80780http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80777#p80777
Michelle....you might want to consider KrisV's suggestions and tattle on your husband. His physician needs to be notified.Hugs,Marion]]>Sat, 05 Oct 2013 04:18:56 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80777#p80777http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80775#p80775
Dear Michele, pain, I have to say it like it is. Does not matter if pain is from something simple or something big if not kept under control it will be harder to control later! That is why it is so important to start at the get go and keep pain under control. Has he said why he is so against taking something for pain? I would suggest the next time you see the ONC ask him to explain to hubby why it is so very important to keep pain under control. He can start out small and work his way up to where he can still keep it at a minimum. Do you think he is scared to start on pain pills as its like an admission to him that this is not a good sign? I cannot imagine why anyone would want to suffer like that. I hope you or the ONC can work some magic with him. He is also using up the good energy he has to fight the pain, when he needs his rest to put up a good fight. I am sure you can call the ONC for the LAB report. Michele, you will get through this I can see it between your lines, you will handle it AND WE ARE ALL HERE FOR YOU.You never know how strong you are until "strong" is the only choice you have!]]>Sat, 05 Oct 2013 03:59:45 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80775#p80775http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80774#p80774
I figured I better get an update on here.1st.. My husband had a ct scan done to see if they could see whats the cause od his pain. Ct scan showed really no change. The doc said maybe there might be a couple of lymph nodes that may have changed slightly. But they are considering everything stable.2nd... They give him delodid ( i think i spelt it wrong) for his pain. Which he has not taken. He refuses to at this point. He's stubborn!3rd... Now on September 27th his last chemo appointment he had his blood work showed that his one kidney level was low and the other is high. Also the ALK phosphatase has gone from 145 to 157 and AST went from 31 to 50 and ALT went from 55 to 75. Also he lost 4 pounds. This is within 2 weeks.Don't know if it means much but I worry because the pain in his abdominal pain hasn't lessened at all.So in the past month he has lost about 8 pounds.I wasn't able to make it to his last appointment with him because my kids had an appointment the same day. So him being him didn't ask any questions on his blood work.I dont know if i should get over concerned but I am.He is really restless at night. He says that when his stomach bothers him the most. So he will get up a sleep on the couch with his legs up on the back of the couch. He says it helps.Oh the doctor did mention that maybe the pain could be caused from some of the lymph nodes that are swollen in that area or scar tissue.Today wasn't a good day for him. He said his stomach has hurt and felt bloated a lot. Just feeling lost today. I still find myself in denial with all of it. Then when he has days like this it hits me like a ton of bricks. Then i set and think how am i suppose to go on without him? I have no idea how to handle all of this and be strong for my kids at the same time!Will post another update after his appointment on the 11th.

Prayers go out to everyone going through this,Michele

]]>Sat, 05 Oct 2013 03:27:56 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=80774#p80774http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79758#p79758
Michele - I feel your pain. I have the same type of husband....just keeps telling it will be okay and don't worry. His first symptoms were gallbladder like symptoms and it took me call and tattling to his primary care doc to get the ball rolling on that. When it all came back negative for gall bladder he just shrugged his shoulders and said see. Two weeks later he jaundiced so bad that it looked like someone took a yellow highlighter to him. The kids were shocked and a friend that came to visit was beyond shocked. He still just kept shrugging it off because he felt fine. He wanted to wait from Saturday until Wednesday when we had an appt with the GI doc. I finally fell to female manipulation.....I used tears and guilt (please don't tell that I did that on purpose) and got him to go to the ER. Of course I had already begun to suspect what was going on because of CT scan a week earlier. Now he still tries to hide his elevated temps from me to keep my from worrying. They just don't get that we worry more when they don't talk to us. You may have to work some miracles with this one....he sounds as stubborn as mine. Don't ever feel guilty if you have to use of tears or manipulation or point blank lies to get what you think is best.....it's what needs to be done. Good luck tomorrow and hopefully he gets checked out soon.

KrisV

]]>Sun, 08 Sep 2013 19:09:14 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79758#p79758http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79757#p79757
Hi everyone. Thanks for all the input. I still have not been able to talk him into going in to be checked out. He just keeps telling me to call his oncologist tomorrow and see what she says. He's so darn stubborn.He says the pain is not as bad as before but I wonder I'd hes just saying that or if its gotten better. He's up and gone with some buddies from work today so it must be better. I sure hope so.He just doesn't realize how I worry. He always tells me I have nothing to worry about or be stressed over. Man is he ever wrong. He says hes the only one that has to worry. Dont matter what I say he thinks it doesn't have much effect on me or the kids.What am emotional roller coaster this shit can be. I still try to figure out how he got this type of cancer. Just dont make sense. I will update more tomorrow once I call his doctor and see what she recommends.Thank you all so much.Michele]]>Sun, 08 Sep 2013 18:10:15 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79757#p79757http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79755#p79755
Hi Michelle I too have experienced ab pain and in the same areas as your husband. I am about to start my third cycle of chemo. After the first cycle my pain was bad enough that I went the local ER and informed by ONC that I would be going in (ONC is two hours away). As they said turned out nothing was wrong and was prescribed some medication. Fortunately I saw my doc just a day or 2 after and asked the question is the pain from chemo or is this my disease advancing, or possibly something else going on. Doc said at this point it was hard to say whether it's the cancer or chemo. Though she did say that during chemo its common for inflammation to occur and pain could be a result from that. I am not sure what cycle your husband is on but my pain has started to dwindle away a couple weeks ago. Second week for me of having little pain! However I also take medication (took a while to find the right combo that worked for me) that has managed well so I am not suffering. I take oxycodone (not Percocet) and this does not contain any acetaminophen and has really helped me out a lot. I hope you guys get answers soon and I wish your husband to be pain free in the very near future. Good luck to you guys.]]>Sun, 08 Sep 2013 16:47:37 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79755#p79755http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79743#p79743
Hi Michelle,

Really sorry to hear that your husband is experiencing this pain right now. Pain is definitely something that should be investigated immediately as to the cause of it and no one should have to put up with it for too long. And 5 days until he sees his doctor is an awful long time to wait indeed. If he is saying to you that this is real bad then it must be really bad indeed, even if he is trying to hide it.

I'm with the others here in that you should get him into ER as soon as you can as they will be able to help here and I know that once your husband gets some help he will start to feel so much better. Tell him that there is no point in feeling like this for another 5 days when there as things that can be done to help him now. I hope that you get him seen and get to the cause of his pain, and please let us know how you get on. We are here for you too.

Hugs,

Gavin

]]>Sun, 08 Sep 2013 06:17:19 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79743#p79743http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79738#p79738
I had abdominal pain so severe it woke me up. The pain was severe and just kept getting worse. I went to the ER and it turned out to be an intestinal blockage that sometimes happens when you are on chemo. It has nothing to do with whether you are between cycles or not.

I don't want to scare you but ....

RUN do not walk to the ER and have him seen. This is a very serious complication and he needs to be seen immediately.

Sorry to hear your husband is experiencing such intense pain. One concern I have is that he's taking Tylenol. Because of my liver involvement with my disease, and Tylenol is processed through the liver, I was told I could not take Tylenol. I don't know your husband's case so it may not be an issue for him - just wanted to put that out there. In any case, his pain seems to intense to be controlled with Tylenol anyway. He really needs to talk, or see, the doctor before his visit on the 13th. They may prescribe a pain med for him that will help more than Tylenol. I know how difficult us patients can be. We don't mean to make it so hard for our caregivers. We just get so tired of doctors and hospitals visits and the feeling of losing control of our lives. Kris had a good idea about giving him a choice of ER or calling ONC. Maybe you can try that and it will work. I hope so. I hate the thought of him being in pain unnecessarily.

Good luck and let us know how it goes.

Mary

]]>Sat, 07 Sep 2013 22:53:42 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79735#p79735http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79718#p79718
I am with Lainy....either call the ONC or take him to the hospital. One thing that might help is give him a choice of one or the other....either call or go in and promise that if the ONC says go in that he will. One of the problems I have with my husband is his lack of control in his life. He would get frustrated and angry when he felt like all choice was taken away. He had an elevated temp recently and I knew he needed to go it but he was resisting me terribly so I told him to call or go in. He called and the ONC told him to get in ASAP. He still didn't want to go but it wasn't me telling him to go. He still grumbled but was in the ER. Guys can be hard sometimes especially when they start losing control and lose the vision of being the strong one in the family.He may also need a stronger pain medication Tylenol 3 is not really all that strong and it may be his pain is "normal" pain but not well controlled. You may also just taking something routinely...like once in the AM and then again in PM. You can get better control that way.Hang in there and keep an eye on him.We are here.]]>Sat, 07 Sep 2013 18:11:58 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79718#p79718http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79717#p79717
Thanks Lainy, I will have a talk with him. His pain is in upper ab part, on both sides and says its goes to his back on his right side. If i question him too much or watch over him then he tries to hide it. Wish I could give him a swift kick in the butt.He tells me not to worry and that its nothing. Me?, not worry, right!Right now he has been up and running around outside.Hopefully I can talk some sense into him.Thank you so much, Michele]]>Sat, 07 Sep 2013 17:12:47 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79717#p79717http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79716#p79716
Hi Michele, so sorry to hear he is still in that kind of pain. My own feeling is that he needs to be seen. He has a week to go to be seen and this is not right!I think you are going to have to do some tough love here. Tell him that you are either taking him to ER or calling the ONC. I don't know where it is coming from but pain that makes one want to scream. No, no, no waiting. Tell him you are the one taking care of him and he must listen to you. I know, it is hard to role reverse with husbands and parents but it must be done. I thank God Teddy listened to everything I asked of him. Guess he was afraid I would pull out the wet noodle for 20 lashes. Please do what you can do. Pretend I am right behind you egging you on and please let us know what transpires! Sending you a ton of hugs and support!]]>Sat, 07 Sep 2013 17:00:35 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79716#p79716http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79715#p79715
Hi all, was wondering if someone could give me some input?My husband had his second round of Irintecan on August 30th. He goes every other week. He is still having abdominal pain. We were both thinking it was from the chemo but its been over a week since his last treatment but the abdominal pain seems to be getting worse. Two nights ago he said the pain was so bad he could of screamed but then lessened up. Now yesterday he came and told me he was hurting real bad. He had Tylenol 3 so i have him one of those and he said it made him feel better. Then in the middle of last night he woke up and had to take another one. I am starting to wonder if the pain is still from the chemo or if the cancer is on the move some more?He refuses to go see a doctor. Says he will just wait until the 13th for his next appointment.Any info I would really appreciate it.Thank you,Michele]]>Sat, 07 Sep 2013 16:50:44 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=79715#p79715